Life with Phoebe Heaven-Side

Spider

She showed up in the spring. I noticed her spinning her translucent masterpiece outside my laundry-room window. I paused from my folding to watch her work, the beautiful yellow zig-zag on her back, bright against the black as her meticulous handiwork came together.

New beginnings..

Phoebe had just completed 15 months of high-dose chemotherapy, preceded by brain surgery and recovery. Finally our girl was home. We were a family again and life was full of possibility. We set to work on our garden; building the fence, prepping the soil, pulling weeds. Phoebe sat in her little camping chair and held the spade and kept me company, her little green sun-hat shielding that sweet bald head from the hot sun. The farm was abuzz with activity. Beloved friends came to offer their help as we built a chicken coop and put up fencing and tilled the soil.

Sweet fellowship over dirt and seed and shared work.

We were brimming with hope, intoxicated by the mundane. Life was moving forward and I can still hear her shout “No more chemo!” with joy. These were blessed days. A meticulous handiwork underway.

I watched the spider through the spring. Each time I turned the garden hose on, I looked at her up close. By now her beautiful web was complete and full of unlucky flies who’d fallen for her trap. She was so big and magnificent it was hard to miss her in my small window in each day. She just made me happy and her arrival signaled the beginning of my own personal spring. A time to build.

As the days became more vibrant, the garden followed suit. Squash amidst towering sunflowers, tangles of tomatoes intertwined with Zinnias, zucchini vines covered the ground and okra sprang up tall and pointy. We feasted. On life, just the living of it, and on sustenance from the work of our hands. The kids would run to the garden empty handed and return with their proud bounty. Phoebe loved that squash and the tiny tomato varieties and Deacon was my weeding buddy. These days were precious and we understood what it meant to be thankful way down deep, for each moment.

On some afternoons I would show Phoebe the spider. I would lift her to the window so she could see up close. We all loved that this creature had made her home in our window, and now she was creating egg-sacks to hold her babies. We watched as she so carefully twirled the gauzy balls of web with her graceful legs as she worked. Before too long, there were several egg sacks tucked safely around the edges of the window.

Spring gave way to the dog days of summer and in July our hope was crushed. The tumor was back.

And it had spread.

And two to eight weeks.

Soon the garden had given it’s best and the vegetables became less. We lacked motivation now to go on and so it went to seed. I half expected the spider to die, as if somehow our devastating news would have an impact on everything around us. I found myself surprised that the world could go on, but it did, and does.

And then she was gone. My Phoebe. The days were a blur and the funeral and the activity and all the busy-ness. Until at last, we were alone, the five of us, without her.

And the spider was still there. And how could this little spider still be here against the elements and my Phoebe not? But she made me happy still, because Phoebe had marveled at her. We had enjoyed her together and watched her weave her beautiful egg sacks in preparation for the future.

This morning I went to start the laundry. It’s been cold, really cold, and rainy. And I saw her. Not the striking star shape she usually positions herself as, but crumpled.

I am sad to see her gone. But it seems fitting. She had a beautiful spring, she worked hard, she displayed the magnificence of her Creator. She reminds me of Phoebe like that. I will keep watch on those egg sacks, and maybe this spring one of those little spiders will take up residence in my window.

To everything there is a season,
A time for every purpose under heaven:

A time to be born,
And a time to die;
A time to plant,
And a time to pluck what is planted;
A time to kill,
And a time to heal;
time to break down,
And a time to build up;
A time to weep,
And a time to laugh;
time to mourn,
And a time to dance;
A time to cast away stones,
And a time to gather stones;
A time to embrace,
And a time to refrain from embracing;
A time to gain,
And a time to lose;
A time to keep,
And a time to throw away;
A time to tear,
And a time to sew;
A time to keep silence,
And a time to speak;
A time to love,
And a time to hate;
A time of war,
And a time of peace.

Ecclesiastes 3

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About Amey Fair

I am Amey Fair, wife to Nathan, and home-educating Mom to Benjamin (9), Averic (7), Deacon (4) and Phoebe (2) . Phoebe was diagnosed with a rare childhood malignant brain cancer called Atypical Teratoid Rabdoid Tumor on January 1, 2012. She had complete resection surgery to remove the tumor on January 4th and began chemotherapy using the Dana Farber protocol on January 26th.
A few weeks ago I was sleeping in the chair next to Phoebe's bed in the hospital when I heard her little voice drawing me out of sleep. It was 3 am and it took me a minute to shake off the slumber. "Mommy I'm a mean girl" I thought she said. "No Phoebe, you're a nice girl!" I replied. "No Mommy, I'm a MIRACLE!" Phoebe said. "I'm a MIRACLE, I'm a MIRACLE, I'm a MIRACLE!" she continued on. My tears welled up and spilled over as she made her declaration. Phoebe doesn't know the word "miracle" nor the concept, she's only 2. It was as if the Lord was speaking through her like a prophetic utterance. She fell right back to sleep and I sat there awake, lingering in the magical moment. Less than 40 children are diagnosed with Phoebe's type of cancer in the U.S. each year. This is why it's called "ATYPICAL Teratoid Rabdoid Tumor". So, I have titled this blog in honor of Phoebe, our "Atypical Miracle".
We are YWAM'ers, serving in missions through Youth With A Mission since 1998. Before returning to the states 1 year ago, we lived near Guadalajara Mexico for 3 years. It was during our year of agricultural missions training in Waco, TX that Phoebe began exhibiting symptoms from the pressure of the tumor on her brain. Weight loss, lethargy, extreme thirst and vomiting were her symptoms.
We have been granted sabbatical during this time to focus on Phoebe's intensive chemotherapy treatment and are renting a home in Dallas near the Children's hospital where Phoebe is being treated.
Like the woman who touched the hem of Jesus' robe in Luke chapter 8, we cling to Him, knowing that He is Phoebe's healer. If we can just touch Him, be near Him, bring Phoebe to Him each day, we have hope. He is our hope.
Thank you for coming along on this journey with our family. It's therapeutic for me to write it all out, and in so doing, I hope God will use it for His glory.

Beautiful writing, Amy. As I contemplate my life without my husband this Thanksgiving, I guess we need to be thankful for the times we had, rather than begrudge the times we didn’t. In reality, life is a vapor, and we will all be together soon…Lord, please carry us until that day…

Last May at the Arlington Homeschool Book Fair, my daughter, Abby, spoke and you came up to visit and encourage us afterwards. We’ve had your card on our fridge since then, but hadn’t checked it recently. When we went to your page today, we learned of Phoebe’s home going. While we weep with you, we also rejoice because of the mutual hope we have in Jesus.

I don’t know if you are following Amazing Abby on FB, but Abby is home on hospice now. She has good days and not so good. But we are amazed at the people that she is touching with her story. She would rather just go to be with Jesus and be finished with this life, but realizes that for some reason she still has work to do here. In fact, on Nov. 1, when she almost died, she was given a glimpse of heaven and was ‘bummed’ when she woke up and was still here.

We personally have been encouraged by a book, “Things Unseen” by Mark Buchanan. It has made us excited about the place that Jesus has gone ahead to prepare for us!

Thank you for the book recommendation Betty. I remember you all very well. Abby’s glimpse of heaven sounds wonderful and is so encouraging to me as I try to imagine my Phoebe there. God bless you and your sweet family during this time.

Amy, that was so beautiful you have me crying…your spirit is so wonderful and I marvel at your strength. I finally understand what it important in this live and it’s the relationships we form with all living things.

We pray for a peaceful Holiday for you and your family, as you continue to be a light to mine. Lots of love!!! Gina

Oh Amey, you are such a beautiful writer. I am an English major but do not have the gift of the written word – perhaps that is why I enjoy your writing so much – you paint beautiful pictures with words – I am addicted. I have followed your postings for over a year. They have been especially poignant during this time of healing. I think of her and the joy you experienced each and every day she was here. The memories you have shared with those of us whom you do not know are so appreciated – must be a Ziglar trait. Donna Wilkins

You write so eloquently. I can feel your grief with every post. While reading your post I listened to the song that goes along with your verse. (Turn! Turn! Turn! by the Byrds).
Sending hugs from Nova Scotia.

Prayers this Thanksgiving day for the new beginnings that will come as part of your journey, for comfort and peace, and for Jesus to wrap you closely in His love. May Phoebe’s smile from heaven down upon you all send you sweet memories at this time too!

Wishing you and your family a Happy Thanksgiving. I pray for peace and comfort within your hearts today as they must be heavy missing your precious Phoebe. I pray my Rosary daily in her name and for the healing of your family. Know that your family and Phoebe are always in my thoughts and prayers. God Bless, Kathy DeLong

There is just something about Phoebe’s story that hits me right in the heart. I did not know her, but I followed her story. I have now been reading the blog over from the beginning. I think about her every day. It just doesn’t make sense to me. I just don’t understand, and I feel lost – how can I keep my faith when bad things happen to good people?